As discussed in previous chapters the objective of this study was to conduct a
phenomenological inquiry into the concept of stigma in the Ghanaian context, the stigmatization experiences of PLHA and their family members, its impacts and seek ways to confront the phenomenon. Further inquiry was conducted into the significance of gender to HIV/AIDS-related stigma. Symbolic Interaction Theory and Ecological Theory provided the lenses through which the data was viewed, and the research questions are utilized as the framework for
presenting the resulting themes.
Research Question 1:
How do PLHA and their family members conceptualize HIV/AIDS-related stigma in the Ghanaian context?
This question seeks to understand what stigma means for PLHA and their family members. Participants revealed several themes regarding their perception of stigma and what it meant to them. Their expressions reveal how complex stigma is and how complex it is to make meaning out of it. Perceptions from PLHA and family members are presented. For them, stigma is: betrayal, death, fear, disgrace, isolation and the feeling of otherness. Others described stigma as total rejection and a way to make the PLHA feel worthless.
For Yaa it is a simple “betrayal” and Ida said: “Hmm, Not good, betrayal and it really shows what people think of you. I believe its isolation too. It also shows what your family thinks of you and whether their love for you is a true love or money love and also how selfish they are.”
Daavi, Vickie’s mother, believes that, “it’s their way of showing how scared they are of the disease. Who knows, I may have done that to someone else if the doctor had not explained it to me.” For Vickie stigma means death because, “Yes death, because what people will do to you when you have this disease, you will always wish you were dead.”
Stigma can be an expression of “otherness” where HIV/AIDS is perceived to have resulted from membership in a certain group of people creating a difference between “them” and
“us.” This makes it difficult for people to accept that what happens to one person could happen to them and in fact we are all at risk. Vickie expressed that not only does stigma mean rejection and disgrace, but “how much as humans we are always in denial that anything can happen to
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us.” She added, “Oh, yes you know you treat people badly and you forget that you could be in the person’s shoes one day.” For Paul it simply signifies, “the fact that we always think we are different from other people.”Paul’s father, Jacob shared the same: “I guess it means we are different from them so they look down on us. It’s total isolation because they are afraid they will also get the disease and people will treat them the same way.”
Sometimes stigma can be a tool that people employ to fit in society as disclosed by Opokua, Yaa’s sister:
Oww, I believe we are all human and people will choose to behave in a certain way to fit in society. But the thing is, this disease is very scary and now we don’t even know ways in which people get it. So if someone knows that this person has it, that’s it. Anything or anybody that has something to do with the person is out.
Participants also revealed that stigma means outright rejection or a way for people to tell that you don’t belong. Yebson said: “Well, it’s like rejecting you, throwing you away or you become an outcast in everything because you are considered as worthless.” His wife expressed that: “it’s absolute rejection and making the person feel that he is worthless; he is not human anymore because he is going to die. Yes, that is how we feel.” For Paul: “Owww, for me, it’s rejection, outright rejection, because of their suspicion…also it means I am worthless and may be they don’t consider me a human being anymore.”
Participants’ perception of stigma and how they conceptualize stigma unravels some of the complexities of HIV/AIDS related stigma. Their perception of stigma brings out how stigma is negative.
Research Question 2:
What are the experiences of HIV-related stigma for PLHA and their family members?
Participants were asked to share some of their experiences since they or their family members were diagnosed with HIV/AIDS. The data show that stigmatization begins with diagnosis and disclosure of one’s serostatus. The experiences of PLHA and family members are presented.
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Experiences of PLHA
Three categories emerged from participants’ experiences: diagnosis and reactions, disclosure of PLHA’s serostatus and expressions of stigma in their daily lives.
Diagnosis and Reactions of PLHA
All of the PLHA had similar stories surrounding their diagnoses: they had been sick and admitted at the hospital several times and several lab tests were recommended by medical doctors. The data for this study show that stigma begun during diagnosis as PLHA were not informed of the kinds of tests until the results were out. For example,Yebson expressed how his doctor insisted that he do a lab test:
I remember I used to get sick all the time and so I went to the hospital and the doctor asked that I have to do a test; he didn’t mention the name of the test to me. But he insisted that I do it otherwise he will not take care of me.
Vickie recounted how she was diagnosed:
Okay, well it started like fever. I got sick all the time and so I went to a clinic here and so the health practitioner told me to go for some lab works. So when the results came he asked me, “do you have money?” and I asked him, “why?” Then he asked again, “do you have money?” and so I asked him, “how much?” and then he said, “the medication is expensive” and I asked him what the problem was and he said I have gotten the disease called HIV.
Similarly, Ida expressed:
I told him [doctor] the symptoms I have been having. So he told me he will
recommend some lab work for me. But he didn’t tell me what kind of test it was. So when the results came, he called me and inform me that I have HIV virus in my blood.
Many PLHA go through a process, from the initial feelings of shock, despair, grief and sometimes denial to an eventual acceptance and understanding that they have a life to live.
Denial, disbelief, worry and thoughts of suicide were the major themes that emerged as PLHA’s reaction to their diagnosis. For example Vickie expressed her reaction: “Shock, surprise, I was very worried. I cried when I came home. I did not believe it, even when I was in the hospital in Accra I did not believe it.”
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PLHA did not believe the diagnosis either because they did not think it could happen to them or they were not involved in any of the perceived behaviors that are associated with HIV/AIDS. Ida said: I didn’t believe it. I didn’t believe it. I told one of my aunties but she also did not believe it so the two of us we never believed it. I guess we all did not believe it could happen to us. Paul’s disbelief was associated with his good moral behavior and the fact that he is a virgin. To Paul the diagnosis hurts:
Oh, the day I heard it, I wasn’t happy, I was very very sad. I was devastated and I was surprised that it happened that way. I wished I were dead, yes that would have been better because when I heard the results I wasn’t happy in any way. I thought about it and became depressed. I even lost tremendous weight and became like a broom stick. It wasn’t easy. Because it hurts, it hurts so much and I was very surprised.
Being devastated and wishing for death because of a diagnosis is not related to the actual disease but rather the perceived stigma that will be experienced by the PLHA when the
community finds out about their serostatus. Paul recognized that his diagnosis will put him in a place of being stigmatized and so being dead will be the end to that humiliation. What makes it more painful is that he has “…never slept with a woman in my life. I can swear that I have never seen the thighs of a woman before.” Like Paul, Yaa was so worried that she thought of
committing suicide after she learnt of her serostatus:
As for that, initially, I was very very worried and honestly planned to drink poison and die. But I also thought about the children too, and thought that I had to check the status of the children too, may be they will show negative. So my plan was that if I check and there is nothing in them[test negative] I will choose to live and take my medications and tell my husband about it so that he can also go and check his. So he also went and checked his and so when they did not find anything in him, I was very happy and decided that I will keep on taking my medication and live with him.
Yaa’s initial thought of suicide can be attributed to the stigma that is associated with HIV as well as the humiliation from within the home and the community. For her, if her husband and children had tested positive to HIV, then that would have been a disgrace for her family.
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Disclosure of PLHA’s status took five forms: voluntary disclosure, involuntary
disclosure, implied or perceptible disclosure, third party disclosure and nondisclosure. Voluntary disclosure takes place when the PLHA chooses to disclose their status of their own free will.
Depending on the PLHA’s ability to keep his/her status secret, s/he could control how many people s/he chooses to inform. The decision to disclose one’s status on one’s own terms depends on how one perceives the reaction of the person to whom the information will be revealed and its impact. Usually it is to receive some kind of support. According to Ida, she informed her
supervisor so she could help her:
From there I went to my supervisor and informed her of the situation, so that she can help me out or tell me what to do. So she took me to the authorities but they refused, and let me go, but at that time I didn’t have much education about this disease and I didn’t even know my right so what they gave me was one month salary and they released me.
Involuntary disclosure, on the other hand, is where the PLHA is asked by health workers to share their status with one other relative prior to receiving Anti-retroviral treatments (ART) as explained by Yaa:
Part of the rules is that if a person is diagnosed with HIV/AIDS he or she has to come with a relative or friend for support and also as a witness, who will make sure that the patient adheres to his or her medications.
Involuntary disclosure is to enable support for the PLHA and to ensure that their medications are adhered to. However, sometimes the “guarantors” may refuse to provide
guarantees for their support. In Yaa’s case for example, after disclosing her status to her husband so that he could give her a guarantee for the ART, he refused it because he said he did not
believe the diagnosis. She had to beg him to guarantee the medications for her.
Implied or perceptible disclosure takes place when the PLHA’s status is inferred from his/her poor health, physical appearance and weight loss. In this form of disclosure the true status of the PLHA is not known for sure and s/he can choose not to affirm people’s suspicion even when confronted about it. Paul expressed:
I don’t know. I have not told them but I know they are suspicious, that is why they are not on talking terms with me. You know, I have been sick on and off so they suspect that
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disease. None of them have been able to ask me anything but they are not talking to me, and don’t visit as they used to do.
For Vickie, her landlady’s husband inferred her serostatus from her frequent use of toilet:
Vickie: So, I used to stay in a compound-house before I moved here, where you came to meet me.
Gladys: Okay.
Vickie: And I used to go to the toilet frequently and so my landlady’s husband asked his wife to evict me from the house because he thinks I have that disease.
Gladys: How did he know?
Vickie: Ah I don’t know, he said the way I used the toilet frequently, he suspects it’s that disease, so around that time the coordinator sent me to a catholic hospital, in Accra which treats most HIV patients.
Some family members, also were suspicious of the PLHA’s status before they were
‘formally’ informed. Opokua tells how she suspected her sister’s serostatus before she informed her:
Yes, she told me herself, but I kind of suspected it because she was getting sick all the time and made frequent visits to the hospital, and one of their co-tenants informed me that she used the toilet often, so I was very suspicious. But one day after one of her
frequent visits, she called and said that she was going to tell me something and that she is begging me not to tell anybody, not even my children and my father.
The introduction of Anti-Retroviral Treatment (ART) helped the PLHA gain weight. This confounded many people who relied on physical appearance as signs of one’s status. Vickie said, she goes to the hospital, takes her medication regularly and so when she gained her weight back, people started doubting:
They doubted if it is really the disease, so they started talking. Some will say: “oh it’s not the disease [HIV/AIDS].” And then others will say: “it’s the disease. Now they say there is medication for it.” So it went on that way.
Yebson simply put it, “because if you will take it [ART] consistently you have no problem.”
Sometimes, some medical workers and religious leaders abuse their power and share the status of the PLHA with other people. Also, in many situations PLHA’s friends, co-workers and family members share PLHA’s serostatus with other members of the community. However, like
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perceptible or implied disclosure, for third party disclosure the true status of the PLHA is not known for sure, and s/he can decide to affirm it or deny it. For Ida, her colleagues did not know about her status until a nurse (who was in the consulting room with the doctor) informed them.
Similarly, Faustie said she was prepared for the worst of her husband’s illness until she found out from a pastor about his status: I heard if from a prayer camp, where he was when he got ill. I went to visit him and the pastor told me.
The PLHA revealed that if it had not been their family members who disclosed their status to other people, it wouldn’t be known. For instance, Vickie recounted how her disclosure to her brother snowballed in her family. With tears rolling down her cheeks Vickie said:
Yes, the man that I trusted, he went to tell my father that this is what is happening. In fact I was very sad, I had never been sad… so my father also went and told the rest of the family that I have gone for the bad disease so they should come and look at me.
Similarly, when Yebson expressed:
Yes, so when I informed my mother she also informed my uncle about it. I guess she did that for sympathy. Out of “okra mouth” my uncle also spread the news to everyone we knew in their community. So our family relationship changed.
For Yaa, it was her husband who made it known to other people:
What made people know my problem was my husband’s behavior. When he came to dissolve the marriage, he intentionally got drunk so he could say what he wants to say.
And he told all the people gathered that I have this disease. Also at the WAJU [Women and Juvenile unit] he made it known to the people there. Even when he is coming to WAJU he brings his friend. So as am speaking I know three of his friends know that I have this disease.
For many PLHA, disclosure of one’s status is the beginning of stigmatization. As a result PLHA are sometimes compelled to conceal their serostatus. Yaa expressed: “So what I have noticed is that if you tell this problem to someone else it is not good.” She shared how some women in her association will not share their serostatus to anyone because of inevitable
stigmatization. When Ida decided to inform her parents about her serostatus, she was surprised to find out that they knew already. According to her: “they said people from my work place had come to inform them already so all they have been waiting for is for me to confirm.” Yebson and his wife chose nondisclosure of his serostatus to their immediate community including their
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children because of their experience with their disclosure to his mother’s side of the family.
Similarly Paul and his parents prefer to keep his serostatus to the nuclear family.
Expressions of Stigma
The manifestations of stigma appeared in multiple ways and vary from overt and blatant to covert and subtle manifestations. Overt experiences were those that participants explicitly experienced (verbal and physical) from friends, other family members and from the community in which they live. Covert experiences were those subtle, nonverbal and indirect stigmatizing experiences shared by PLHA and their family members. Both results are presented.
Overt experiences
Two categories of overt expression of stigma were identified: physical expressions and verbal expressions. Both forms of overt expression are presented.
Physical Expressions
For most of the participants, stigmatizing experiences started within the family. While some family members accept PLHA, some do not. Even those who accept them do not do so whole heartedly. Ida puts it this way: “I also realize that even those who seem to be nice to me are not 100% nice. They are pretending.” Within the home PLHA are separated in several ways from the rest of the family members. According to Yaa, before her diagnosis her sister and the rest of the family ate together, but things changed with her diagnosis:
So from that day onwards when I cook nobody eats in the house, my mother, my sister’s
So from that day onwards when I cook nobody eats in the house, my mother, my sister’s